6 Tips for When Circumstances Leave You as a Solo Alzheimer's Caregiver

Sometimes events in life just happen and we find ourselves in a position that we never dreamed we would be in. Both of my parents battled Alzheimer's disease and additional medical diagnoses.

My dad passed in 2017 and with it brought a new and unexpected season to my life. Mom's cancer came back a month after my dad passed, she had surgery, and lived with a family member. Her living situation just didn't work out. In November 2017 she unexpectedly came to live with me.

Alzheimer's disease impact on family dynamics

I am the youngest of 5 siblings and the family dynamics have always been less then desirable. I love all of the them, but the dysfunction, negative behaviors, and lack of coping skills existed long before my parents' medical diagnoses did.

In all fairness even in the best of family dynamics, life changing medical diagnoses, like Alzheimer's disease, can wreak havoc to a family.

Solo caretaker for loved ones with Alzheimer's

In November 2017, I entered into what felt like one of the loneliest periods in my life. I became mom's sole caregiver at 41. Her relapse of cancer and the addition of Alzheimer's were physically, mentally, and emotionally exhausting. She required more and more care with her activities of daily living (ADLS) and independent activities of daily living (IADLS).

Changes, changes all around me

Mom was experiencing changes to her sleep pattern that left her up all night, "sundowning." Which then left me up all night and unable to sleep. The sleep deprivation, my increasing caretaking role, and my own life responsibilities, all really began to take its toll on me physically, mentally, and emotionally.

I was taking this all on, on my own. It wasn't my choice to go it alone. However, It was happening. I found myself riding that emotional rollercoaster many of us caretakers of loved ones with Alzheimer’s disease ride.

I put on a smile on my face and did what I had to do, but I was grieving so much loss. Including ambiguous grieving, the loss of the mom I once had. Everyday more and more of her was slipping away from me.

On an iceberg, with many feelings

I felt like I was living all alone on an iceberg. I felt isolated from the world. I was consumed by so many emotions. However, at the same time I felt numb.

Daily I felt abandonment and anger towards my absent family. Reaching out, to only receive silence back. It was heartbreaking and I learned how much silence can be deafening. I also was grappling with massive amounts of guilt that I wasn't doing enough for my mom.

Getting supports in place

We are not meant to survive alone in this world. However, reaching out for help especially when feeling rejected from family, can be difficult. Here are some steps I took for myself and my mom. It all allowed me to be a daughter, and enjoy as much as I could with her. I Hope some of these tips help you on your journey, with your loved one.

1. Sought out support groups.
2. Attended professional mental health counseling to help me process, get a plan in place, and to cope with all that was happening.
3. Met with an eldercare lawyer.
4. Learned about Medicare/Medicaid health care system, and what was applicable to my mom.
5. Met with a representative with the US Department of Veterans Affairs (VA). My dad had served in the armed forces and my mom was entitled to some financial benefits and programs.
6. Made necessary decisions to place mom in the appropriate level of care. It was not an easy decision, but necessary.

Even as a solo caregiver, support from others around you can be helpful. Who do you turn to for support? Share in this forum.